Unpredictable: A synonym for chronic illness

I don’t know how many times I’ve written the words, “Chronic illness is unpredictable in how and when it will show up”. Each time I’m reminded of it, I shake my head in amazement. Because it’s so true.

I just celebrated my 60th birthday and a client (I’ll call her Laurie) was asking what I ‘d done. Describing the party we had with loving family and friends, I spoke of how great it felt to be healthy for it. But now, just 2 days later, I was experiencing symptoms – -some I’d never had before and some too familiar.

I rarely discuss my health challenges or how they affect me unless I think there’s a benefit. But this time, my frustration was bubbling on the surface and I shared my sadness. I described how the onset of pain and fatigue had taken the glow right off.

At that, Laurie started to cry and then talk — about her own anger and sadness in living with rheumatoid arthritis (RA). She hadn’t spoken of this in the 8 months we’d worked together.

Turns out that Laurie had just come from her yearly performance review (she’s a paralegal). She’d been relatively healthy over the last year but recently, new pain made it difficult to use her dominant hand.

In her review, her boss said that she understood that Laurie was working as hard as she could and she appreciated that the work always got done. But her boss was having a tough time with the unpredictable nature of Laurie’s symptoms. Then her boss acknowledged that she knew she liked control and the unpredictable challenged her and made her irritable with Laurie.

Laurie got the yearly raise she’d received for the past 10 years at this job. But she left that meeting in a state of shock. She couldn’t believe that her boss had said these things to her and worried about her future at this law firm.

Laurie has lived with RA for 6 years. She needs this job to send her kids to college. She worries that if she loses this job, she won’t find another one. But she struggles daily with the pain, the unknown and all that living with chronic illness does to a person. There are days that she just wants to give up and not face other people and their disappointment in her — or her own.

How do you live with never knowing how you’re going to feel? Or how you’re going to manage in a situation?

There isn’t a blueprint nor easy tips and if someone tries to sell you that line, ignore it. But I can tell you from my own experience, it takes:

vigilant self focus (without self absorption) so you notice what you’re experiencing so you can manage it,

desire for self discovery and renewal so you continue to be resilient and live with hope,

patience with yourself and others when you face disappointment.

I’ve also experienced in my work how imperative it is to have someone with whom you can talk. That person should challenge you to be more than you thought you could be — a therapist or a coach. That’s the best investment you can make in your health.

About Rosalind Joffe

Comments

I have a friend and co-worker here at my job who suffers from chronic illness. It helps to have someone to talk to who understands. I appreciate all the times she lets me talk her ear off and hopefully I do the same for her.

Thanks for posting this, Rosalind. I’m glad you were feeling well for your birthday, even if you didn’t feel well afterwards. It’s sad that so few people understand the unpredictable nature of CIs and how they affect us. I’ve been meaning to write about this for a while myself, and your post inspired me to finally do it. I linked to this site on mine:http://chronicrants.blogspot.com/2011/08/you-really-want-my-illness-to-be.html

This post hit home for me. Although I am very lucky to have a boss who is understanding and respectful, I recently had to tell him that my plate was too full and admit that I’d become overwhelmed at the thought of trying to get it all done on time. I had agonized over bringing it up. To my surprise he immediately went through my tasks to help me reprioritize and even took some tasks off my list to do himself. I hate to ask for help but I hate letting others down even more so I was relieved. However, I still worry that he sees my shortcomings more than my efforts. I am working at least twice as hard as I used to before FMS but I seem to make more mistakes and apologies for them now. I worry about my income.

I’ve worked at this company for almost ten years now and hate the idea of disability though it seems inevitable. I am doing my best to work full time as long as I can and hold onto my health insurance, but I know some day, that difficult decision will be upon me and the guilt of bringing down the household income will plague me.

You are fortunate to have this boss. It sounds as if you and your boss have created a relationship of mutual respect and he knows you’re a valued worker. It must be difficult to contemplate leaving. I hope for you that you can work as long as you are able and that you can continue to ask for and get the shifts in load that will allow that. I’ve coached many around these issues and have seen first hand how it takes patience and confidence to make it happen.

Thanks for your reply. I just wanted to add that I think open and honest communication is key in gaining respect in any relationship. Not every participant will recognize the value and reciprocate, but when they do, everyone benefits.

chronic illness is unpredictable and many people do not understand including my parents. I agree that you need to find a support person. Also have patience, compassion, good insight to your illness and self.
Aimie